Bumpy, but smoothing out.

"They" said that the G-tube "may exacerbate reflux." They didn't say much else. Thank goodness for the Parent-to-Parent forum and all of the mothers with kiddos on feeding tubes who have answered my questions these last two weeks. These women know because they've lived it. According to these moms, it almost ALWAYS worsenes reflux - for 1-2 months while they get used to a new area of tension in their stomach. I have been dropping in on this forum so much lately... "Is this normal?" "Does your child's site looks like this?" "What does granulation tissue look like?" What in the world did parents do before web-based forums? Good lord, I would have gone crazy. As if it's not enough to try to get used the simple fact that there is a hole in your child's stomach.

Things are smoothing out now. We were able to catch the infection early and after six days of antibiotics, now have it under control. We've had to take a few steps back and do slow, drip feeds to try to increase Owen's tolerance of this new sensation in his stomach. This is normal in the world of G-tubes. He's probably lost a bit of weight the last couple of weeks, but again, all the P2P moms say this is common. We have a follow-up GI appointment tomorrow and hopefully we'll be able to discuss moving to the low-profile, mic-key button in June. I'll be glad to not have to accommodate the 6" long tube that's always present, like an added appendage, but on the opposite side of the map.



Sarah Ono knit a beautiful, wonderfully soft and silky blanket that we just received. I couldn't resist sneaking in on Owen while sleeping and immediately giving it a try.

I noticed from the photo that you really get a sense of Owen's lovely, red curls. Kelsey says that we are "not cutting Owen's hair." I'm inclined to agree. We'll keep you posted.

Musings on life that make sense to me.

"I sometimes wake in the early morning and listen to the soft breathing of my children and I think to myself, this is the one thing I'll never regret and I carry that quiet with me all day long." - Brian Andreas



I happened upon Brian Andreas' work at Fireworks in University Village last December after one of Owen's appointments at Children's. I immediately fell in love with his stuff and spent at least 30 minutes looking at his various collections - sculpture, storybooks, prints. I ended up buying an unframed print for Owen's room called "Deep Roots." His musings on life are so original yet so true. His sculptures, so absolutely beautiful and vivid in every sense, incorporate weathered wood, metal and brightly colored images.

I just recently discovered that Brian was born in Iowa City in 1956, lived the majority of his life as a young man in California and now lives in Decorah, Iowa with his family. Ahhh, it all makes sense...

"Make sure you got clean underwear, she always said, in case you get in an accident & I always figured that'd be the least of my worries, but now I'm older & I see there's a lot you can't control & some you can control & clean underwear is one of those you can. For the most part." - Brian Andreas.

Home again.

Owen continues to amaze me. He heals fast and has never been sick (knock on wood) despite being in and out of hospitals and doctor's offices his entire life. His strength and resiliency shined the last two days.

The G-tube surgery and insertion went great (Did I ever imagine that I would say that about a surgical procedure to insert a tube into my son's belly?) as did the recovery and the first 24 hours (the "critical period"). The GI surgeon, Dr. Wahbeh was amazing, compassionate, professional and experienced and is someone I would recommend without hesitation. According to the nurses I spoke with, I'm certainly not the only one who thinks he's great - he has a reputation for being one of the best in his field. Dr. Wahbeh said Owen's G-tube was the easiest he has placed in quite a while. The entire procedure lasted 15 minutes. Owen was in recovery for a mere 45 minutes.

The most difficult part was handing him off to the anesthesiologist, Dr. Orr, right after he smiled and cooed in front of both she and Dr. Wahbeh. They were totally charmed and immediately Dr. Orr said she should be the one to hold Owen since Dr. Wahbeh would be "the one to poke into him." Fortunately, Dr. Wahbeh found the humor in that remark. And off Owen went, in the arms of Dr. Orr. The second hardest part was lifting up Owen's gown once he was in his room to have the first look at the tube.

You learn how to maximize your in-patient stay at Children's and while we were there, I requested consults from Dietary, Physical Therapy and one with Robin Glass from Occupational Therapy. Robin is an amazingly talented, well-known, humble and very likable woman who we met in August during Owen's initial admission. She has researched and written extensively on infant feeding issues. We left with so much great information and good tips from Robin on helping Owen to overcome his oral aversion. He is also scheduled to see her in a few weeks in clinic for a feeding evaluation followed by a swallowing study to assess the efficacy and mechanics of his oral feeding abilities.




Kelsey surprised us with a visit Monday afternoon and took the photos that are posted. He is so busy right now, with a spot on a panel discussion tomorrow at the University of Puget Sound in Tacoma, "Making a Profit While Making a Difference," event and with numerous other projects and engagements in addition to the enormous task of running GFC. We are now more comfortable with our roles - mine as a stay-at-home mom, working on GFC projects from the home office when I can and Kelsey managing the business operations - both the day-to-day and the long term planning. We are both busy, as we like it, and life seems so much more managable now that there is a sense of routine and predictability.

The G-tube (more accurately known as a PEG tube) in the photo will be replaced in eight weeks during an outpatient visit with a much smaller "mic-key button." The larger tube and "button" (plastic piece that lays against his abdomen) are typically only used during the initial healing stages. The "mic-key" is a small, plastic piece that a feeding tube snaps into while feeding. It is extremely low-profile, comfortable and means that Owen will be able to once again enjoy "tummy-time!"

Thank you all for the emails, phone calls and text messages throughout yesterday and today. It's what gets us through these bumps in the road.

Dreaming of a fat belly.

Owen is scheduled for a 9 am surgery on the 17th at Children's for a G-tube placement. It will be a two day in-patient stay. Good thing he's not Irish or this would put a serious damper on his St. Patty's Day festivities.

The G-tube is a good thing - even though I was opposed to it even as recent as a few days ago. I just hate to see another intervention, this time a surgical one, and one that requires a stay at the hospital. But Owen is rapidly gaining weight with the use of a tube, is making all sorts of fun noises and is experimenting with smiling all of the time now. He seems so changed. I think it's a combination of coming off the ACTH, having more food and less (no) vomiting. The NG tube irritates his face, is a short-term solution and has created an oral aversion. The G-tube is inconspicuous, does not muck up our efforts to get Owen to eat solid foods and is low maintenance. I know it goes without saying that each decision we make is with Owen's quality of life in mind and given this, and the arguments we recently heard in favor of the G-tube from Dr. McLaughlin (the neurodevelopmental pediatrician at Children's) and the dietician who has been following Owen, it is the right decision. Owen's pediatrician has been encouraging the use of a G-tube since October.

Owen made the rounds last night at an Indianola gathering at Kelly and Dave's (for Corina and Lucy's birthdays) and was so content to be held by a few admirers - all whom were so good with him. It was so liberating to be out and to be with a large group of people who didn't stare at the oddity of the tube or the fact that Owen is different, but rather who smiled, touched him, held him, talked to him. And most of the Indianola kids know him - it warms our heart when they come up and say "Hi Owen!" At one point, I had to search the crowd for Owen - he was with Sarah - she was showing him the light and shadows through the leaves of a very large, loyely tree in the yard. Later in the evening he was smiling and smiling and smiling for Elizabeth. It was such a positive experience for all of us. It is so good to have community in Indianola.

We caught Owen on tape experimenting with smiling again and have promised many of you the video. Please excuse our unabashed giddiness... We are parents who long - and have waited long - for our baby's smiles.

Thanks for thinking of Owen on the 17th. May his belly grow ever larger.

"Hope is not blind optimism."

Says Barack Obama...

We had a great visit this week with Dr. MacLaughlin, a neurodevelopmental pediatrician at Children's Hospital. He said based on Owen's MRI, which had not been so carefully and compassionately reviewed with us, image by image, until this visit, that he "expects Owen's vision will improve." He also said that children like Owen require even more calories than "normal" babies as they are not only trying to grow, but trying to heal, to recover from an injury. He has over 35 years of experience in his field and said he's seen so many parents struggle with "the tube decision." He encouraged us to have hope - for many things.

We have decided to move forward with a G-tube (tube inserted directly into the stomach), which will be placed sometime in late March. The NG tube is a temporary solution, and is working great, but has its disadvantages. With a G-tube, Owen will hopefully take better to solid foods and will have less discomfort than that associated with the NG tube. He is fattening up and the tube has almost entirely eliminated the vomiting. He is even more adorable with healthy amounts of sweet, sweet baby fat.

We have been very sleep deprived the last three weeks... So many of you have emailed asking about Owen - I'm sorry to have dropped off the blog-o-sphere. We appreciate all of you making the effort to stay connected. After a slow process of elimination, we determined that Owen was awake and very agitated (screaming) almost every hour during the night these long three weeks due to the Zonegran that he was taking for seizure control. We now give this to him in the morning, instead of right before bed as had been prescribed. We are all now sleeping soundly.

Owen has resumed experimenting with smiling and does this repeatedly each day. It makes our heart melt each and every time. He is now also cooing and making noises, especially during the night. It makes Kelsey and I laugh with joy, even at 3:00 am. He is in his last week of the ACTH injections.

Life seems to be somewhat normal for us - something that was hard to imagine even just a couple of months ago. There are no crises. No emergencies. No seizures. We all know and understand each other and there is no longer any guessing as to what might make Owen happy or content. He enjoys the sounds of the garden and the warmth of the sunshine. And Kelsey and I enjoy cooking in the evenings - really cooking - wonderful dinners each night. We are getting out into the garden (our kale, lettuce and radishes are up), are doing some additional landscaping in our yard - moving soil, digging in one-man rocks, terracing new vegetable beds. Our garden this year will include a melon patch, a sweet corn and sunflower bed and a section of garden with trellises for sugar peas, pole beans and cucumbers. We are making plans for travel this summer and are feeling overall more settled. Owen and I spend many of our early mornings, laying in bed, snuggled up together with me appreciating the last vestiges of his babyhood, knowing that these will soon be memories, as are, already, so many of the experiences we've had with him.

The photo below was taken on a recent walk to the beach to observe the lunar ecplise. Ahhh, the beauty and the wonder.

Happy Valentine's Day!

Well, I am once again on ACTH injections and it's no fun at all. My spasms returned last week and they were making me really unhappy. I know that Mom and Dad are keeping their fingers crossed that it works this time as there is no "third time." I am on double the dose that I was before, but on a shorter course. I have been out of sorts the last two days, especially an hour or so after my morning injection. I will be done with this second round on March 19th - a day before the first day of spring. Mom and Dad say that I've got so much to look forward to and to experience out in the garden come spring - the birds, the scents, the herb garden, the fresh soil, the cool grass, walks down to the beach. Spring will be a good time for all of us.

I wanted to share the link for my friends who taught Mom and Dad how to give me extra food by tube. Tobin has been through so much and is such a strong little guy. I hope to spend time with him once spring arrives. Mom and Dad say we are so grateful to have so many caring people, such as Tobin's parents, in our lives.

http://www.triciakurtzman.com/Tobin

Mom and Dad continue to take photos and video... I keep telling them that I'm not a huge fan of being caught on camera, but they just keep gettin' me on film. Check out my sweet gecko shoes from my Great Aunt Lei Ann. I've worn them several times the last week and have received so many compliments. And the yellow bath towel is from Grandma and Grandpa Chalupa. It is so nice and soft and feels so good on my skin! Cousin Tiffany (and Jamie and Evan) sent me some totally rad Valentine's Day bibs which I haven't yet had a chance to try out. I think it is okay to celebrate Valentine's Day over the course of several days, and I plan to test these bibs out in the next few days. Stretch out the looooove - that's my thought. My new dog friend, Dutch, is a hoot. He loves to cuddle - with me, with Siva, with anyone really... he totally digs Dad's lap.






Happy Valentine's Day!

Love, Owen

Tubes and smiles.

We finally made the difficult decision last week to begin using a feeding tube for Owen. The NG (naso-gastric) tube slips through one nostril and ends up in the stomach where it deposits the much needed calories. It is not a permanently placed tube and we have been trained on both removing and replacing it. It is pretty benign and seems to be working exceptionally well for Owen.

We have tried so hard to get Owen the level of nutrition he needs, but always fall just a few ounces short most days. Our pediatrician, Dr. W., connected us with a wonderful woman on Bainbridge Island whose son developed a serious heart condition at birth. At seven and a half months, he just graduated from the tube. From what I understand, his survival is also a miracle. His mother had extra supplies and wanted to provide training and support to another set of parents in need. It was such a generous act of goodwill for Dr. Walters to arrange this and introduce two sets of parents going through similar struggles. I cannot say enough great things about the level of care Owen has received from Dr. Walters and the staff at Bainbridge Pediatrics.

Owen now gets slow "drip" feeds through the tube during the night and during the day, is fed mostly from his bottle. We were told that it was probably the case that Owen had developed a major aversion to bottle feeding as he knew that only led to vomiting and that when not forced to take more than a couple of ounces at a time, something he can comfortably handle, he would again readily take the bottle. This has happened and we are keeping our fingers crossed that this continues.

Owen now sleeps more soundly, is getting the food he needs and the quiet naps he needs, is not constantly plagued by the fear of losing his food and we have substantially more flexibility in our lives, not having to hold Owen upright for hours a day after feedings.

The even better news, in my humble mommy opinion, is that we are getting more and more smiles and some that seem to be purposeful - an expression based on positive feedback. Owen began experimenting with smiling a number of weeks ago. We've been told by our various support folks that this is a built-in expression in infants and that for most babies, it is reinforced by the visual queue of parents smiling back. In Owen's case, we cheer and laugh and squeal with enthusiasm. Sunday morning, he was smiling and smiling and smiling for Kelsey and I as we cheered him on. The same thing happened this afternoon for Grandma Janet and I...



Owen will be seven months old on Wednesday. It so good to finally see a smile on his face.